When an #autism diagnosis is a double-edged sword ..
By Jeannette | April 29, 2013
As many readers will know, T was diagnosed with high functioning autism last week, our second child now officially on the spectrum.
We’ve received the official report already and it’s very accurate, very detailed and although my initial reaction on hearing the diagnosis were to cry, it’s a relief. All those traits which I’d observed and tried to ignore were all part of T, our loveable, stubborn, clever T.
A diagnosis means (hopefully) that school will now take his need for work above his peer level seriously, it means that (he’s in year 5) we can talk to secondary schools and establish a plan for support. It also means we weren’t imagining the traits and (hopefully) aren’t rubbish parents.
But, it doesn’t change T as a person, why would it? People who knew him before last Tuesday shouldn’t try and pick apart his character and his traits.
Take for example, his football. T’s idea of relaxation and self-calming is to bounce on our trampoline, with a ball, commenting as he’s heard TV/radio march commentators do, it doesn’t harm anyone and it’s his de-stress tool.
T’s obsession from an early age has always been football, at 18 months he could name all the premier league badges and I would have to laminate football pictures/top trump cards so that he could carry them with him.
He’s also incredibly stat-focused, but that’s ok, it’s him and sometimes the conversations about matches and permutations can grate but it’s what he likes and who he is.
He plays in the team that Hubbie coaches and it’s their release every Saturday, playing a game in the morning and then going to watch a local match in the afternoon, it’s their time, their combined interest time and it’s good that they can do this.
One of the other coaching staff – who all knew on Tuesday evening about the diagnosis by email – said to Hubbie “you know, he looks so normal…but I can tell from ….and how he is about ….that yes, there’s definitely a problem”.
A problem? He’s the same child he always was. Don’t try and pick him and his traits apart, he’s the same boy he was before Tuesday.
Please, just accept him.
17 Comments
ouremuk66 on 29th April 2013 at 9:51 am.
Seriously? How can being obsessed with football be a problem to a football coach? I can only hope (in his cack-handed way_ that he was trying to be supportive!
AutismMumma on 29th April 2013 at 2:48 pm.
I know, it was strange but hopefully now he’s said his bit, he’ll accept T as not-having-changed! X
niccilouise on 29th April 2013 at 4:07 pm.
When I first read your last post I expected this to happen a little. There are still, as you know, so many misconceptions of autism and many people in the wider world picture autistic savants. Luckily, as the family you appear to be and as the happy children you appear to have I am sure you will cope with the negatives of a ‘label’ easily. It does seem with the transition to mainstream you may meet more comments like this by people who don’t know your daughter. But in the long run I think it will all work out. It stems from ignorance not lack of feeling in my experience with labels.. Maybe giving out information released from a charity like NAS would help? Not that I think you need advice.. Keep it up x
niccilouise on 29th April 2013 at 4:10 pm.
I meant to say.. It will all work out for the best in long run knowing. It is a good idea to have that support in move to secondary school.. Sorry not mainstream.. I sure he will love the higher classes.
AutismMumma on 30th April 2013 at 11:48 am.
Thanks N, I did know what you meant, don’t worry.
I guess the one thing I never want to happen is that T is perceived differently at his football because that is his passion, his obsession.
Hopefully, he’ll be accepted for the same boy he always was.
It’s a same that a “label” is necessary sometimes but that’s life.
I really appreciate your comments x
niccilouise on 30th April 2013 at 4:11 pm.
I picture him as becoming a famous star in the field.. Either as footballer but maybe as support staff sharing passion with others x but who knows.. He may move on to cooking or architecture! Who knows with kids.. Lol.. The waiting to see is exciting though x enjoy your week x
Pinkoddy on 1st May 2013 at 3:26 pm.
Maybe the football coach just feels he *needs* to say something and just thinks he is being supportive.
AutismMumma on 1st May 2013 at 6:56 pm.
Thanks, you too x
AutismMumma on 1st May 2013 at 6:57 pm.
Could be, I’m sure it will all be fine in the future (hope so anyway)!
Sandra on 2nd May 2013 at 9:33 pm.
People forget labels very quickly. I found when we got my eldest’s diagnosis we got a range of reactions from “I’m so sorry” to ” you must be really pleased to know at last”. I think they felt the need to say something, anything to acknowledge what we’d told them. It never occurred to them that we might not appreciate being made to feel that he’d got a terrible disease. He’s still the same boy, the diagnosis is just a title. Use it as necessary to get any help and support he needs. Then forget about it. x
AutismMumma on 5th May 2013 at 3:01 pm.
Thank you, will do x
Debs A on 23rd June 2017 at 1:41 pm.
Oh the joy of labels and people who have no idea what to say but still choose to speak!
Debs A recently posted…Gourmet Burger Kitchen – Review
Jeannette on 23rd June 2017 at 6:37 pm.
Yep, it still prickles me!
Rachel George, Ordinary Hopes on 23rd June 2017 at 2:22 pm.
I am sure that people think the “looks so normal” comment is a nice one. I used to get it so frequently when my son was little. He couldn’t sit or stand and I think they just didn’t know what to say.
Rachel George, Ordinary Hopes recently posted…When you wish upon a star…
Jeannette on 23rd June 2017 at 6:37 pm.
That’s so true. You’re right, it’s saying something/anything when nothing would have been better x
Inclusive Home on 23rd June 2017 at 3:37 pm.
Labels do come as a mixed blessing, but I think the positives generally outweigh the negatives in order to get the right support. Without a diagnosis, I think people are still likely to say stupid things speculating about quirks and traits anyway!
Jeannette on 23rd June 2017 at 6:36 pm.
Very true, we knew that we needed the “label” and it’s helped his school understand, a bit anyway 🙂